Looking for some positive

[Murphgolf]

Hope this doesn't come off as a pathetic attempt for attention because I don't mean it that way. Simply looking for some positive stories or thoughts instead of things like I am writing.

I am losing body fat and have been since this began almost two years ago. It seems to be accelarating. Had severe Herx or something each time I took meds or supplements earlier this week, with severe shakes for up to 30 minutes and temp. as high as 105.7. Had been on Clindamycin IV for a week, along with Tindazole, which I had been taking for two weeks.

LLMD doesn't know if the body fat loss is ACA (from European strain of Lyme) or an autoimmune reaction with Lyme Disease. I am beginning to wonder about the Lyme Disease diagnosis, even with some positives on IGenex testing in bands 30,31, 34 and others. No one seems to have the same body fat loss all over like mine.

Take care of my 97-year-old mom next door, but she doesn't understand why I am not able to take her places like I did. I used to be very active, coached kids in running and did a lot in community. Now, few understand what is happening. When my kids are here they deal fine with it, but still don't get why I'm not doing more.

Don't know whether to get a second opinion form another LLMD, but that's tough too because I work for myself and this has drained a lot of work and money paid out to treat.

Just looking for thoughts and some good news. Never thought I'd write something like this, but there sure isn't anyone here to talk with about it.        

[cave76]

I'm glad you're keep a positive attitude but still trying to find a solution for your health problem(s).

"Pray to god but keep rowing to shore"

I'm doing fair to middlin' for the condition I'm in. :) But not buying green bananas.

[Murphgolf]

Thanks. I have really been working to stay positive even as weight and fat loss seem to be (a)excellarating. Will start back working in meds slowly today. was off for a few days, which worked out well because I had my kids. Like being off the medication, but it also doesn't treat anything like that.

Hope you are doing okay. How are you feeling?  

[cave76]

Another good outcome:

"Late in 2010, after six years of a mysterious and debilitating illness that often left her too weak to move or speak, she was finally diagnosed with late-stage Lyme disease. She underwent two years of intensive therapy. Now on the mend, Ms. Hanna is returning in a big way. "

http://tinyurl.com/me345zm

[cave76]

As I was browsing that Other Forum I was reminded of the difference between forums. Even though the Other Forum I mentioned above has deteriorated in some ways------ I was reminded of how it excels.

It really is a 'community'. One very sick member was frightened because she was going to be left alone for 5 days. That may sound 'silly' to some but not to those who are so sick they can barely take care of themselves. (Been there, done that)

The community jumped in and complete strangers kept in touch with her each day so she wouldn't feel alone, offering suggestions----- but mainly just keeping in touch. In the past people have stayed up all night, posting to people who were in dire straits and had no one else to talk to. Even a few suicide watches.

Not all forums are like that.

[cave76]

I found a thread on a forum which has three pages of success stories from 2008 to 2013.

I just glanced through them (again) and found that, as usual, some people have credited herbals, Rife, harmonics etc for their success. I'll just never figure out why but they are definitely in the minority.

I also saw my name crop up a few times--- people thanking me for my success story. That 'success' lasted a mere 3-4 years (after about 10 years of abx) and came to a halt when I moved to a state that denies Lyme---- denies it so vehemently that doctors are afraid to even mention the word for fear of reprisal!

My posts are gone because I just couldn't keep the snark out of  my posts about some of the practices touted there. :)  That site used to be the absolute best---- but fell into the hands of fairy-dust people and deteriorated.

I can't give the link to it for this forum forbids (!) the posting of links to other forums!!!! But I can PM it to you, if you really want it.  

[blamom]

Getting to remission is unfortunately a process of elimination.  First you must find out what will work for you to get you to remission.  For many its a pharmaceutical process for others its herbal and then there are those that benefit from both.

[Murphgolf]

Cave76 - know what you mean about divorce. Went through one 8 years ago when I think this all started. No one believed me then, including my wife. Though they live close, my kids, who were 10,8 and 6 then, did not live here. And that was frustrating because I knew something was wrong, but everyone thought I was obsessive.

Ephedra - the fat loss is a process. I get light red or bluish "circles" or oval patterns on skin that atrophy after a while. And part of it is from change of diet, but the skin issues are definitely a pattern.

Off meds for a few days, so I'm heading out to Univ. of Gerogia for my kids' high school cross country meet. Thanks for responding. Hope your days go very well.  

[Ephedra]

Why do you think your losing body fat?  Is it just because you're dropping weight or is there another reason?  

[cave76]

You're voicing exactly what I and thousands of others have said in the past! So don't feel like there's a fault in what you're asking for.

Almost all of us have gone through that gauntlet of needing some good news in a area where there seems to be so little. And we're still in that spot.

You mention that your friends don't seem to understand, even if they're sympathetic. It's not how you 'express' yourself but it's the nature of this beast (Lyme) that people who haven't had it can't really understand why we can't just take 10 days of an antibiotic and then get back to our life!

The saying is You Can't 'Get It' Until You Get It' is our motto.

I'll tell you something that I'm not particularly proud of: My husband and I were going to a therapist. (Lyme is probably responsible for MANY divorces when a spouse just can't handle a sick mates illness)
Our therapist told us of her fairly recent bout with breast cancer. Her friends and family all rallied around her, cooked dinners, helped with housework (she had children) and otherwise continued that support throughout her chemo.

I almost cried. She, her family, friends AND her doctor knew what was wrong with her. She would either get better or die. (She went into 5 years of remission, happily)

I was the only one who knew what I had-----or rather a strong suspicion. And I had to see 15 doctors before I found a doctor who would treat me.

I'm ashamed to admit that I almost hated that therapist for a few minutes----- but other Lymies will understand that.

Many Lymies have had loving family and friends and I'm totally envious of them. But reading the forums for 2 decades has shown that there are also MANY who have that feeling of isolation that is almost worse than the physical symptoms.

Now, I've 'unloaded' on to YOU and you're not alone any more. (grin)
It's what's called a Pity Party and we're all invited. :) We're a strong bunch of people! And I'm almost proud to be part of them, but I'd sell my first-born not to have to be among them.

[Murphgolf]

Though I don't "know," you your constant answers are better than any of my friends. I don't usually write stuff like I did above, but I'm there, for the first time in my life. Could be because I'm not good at expressing to my friends, or anyone, so online with others in similar situations is the choice. And know how much I appreciate it all.

[cave76]

"Don't know whether to get a second opinion form another LLMD"

That would be a good idea. Your present one seems to not be too familiar with Lyme, unless I'm 'reading' him wrong through your posts.

"Just looking for thoughts and some good news. Never thought I'd write something like this, but there sure isn't anyone here to talk with about it."

I know of many people who have gotten better and moved on away from the forums. Many of them are personal friends but most are just people who only check in once in  while to report how good they're doing.

This forum is not a very active one, I agree. There are other forums but they're also populated mostly by people who are still sick or searching for answers.

Perhaps Wonko (here) will come forward and give you her story of remission.